Research Study

We agreed to let Colby participate in a research study at Vanderbilt before his Glenn Operation. The study is looking at developmental outcomes in babies/children with CHDs. You might remember the picture from the pre-op appointment of him with the crazy hair after they put a hat on him to look at his brain activity while listening to different pre-recorded sounds. Well, we went yesterday for his final visit with the research coordinators. They once again put the funny hat on him, but this time they wanted to monitor his brain activity while he watched one of the ladies play peek-a-boo with him. It is so funny to see him with that strange hat on, and it is even funnier to see his hair when they take the hat off of him!

The hat part only lasted about 10 or 15 minutes...that was as long as Colby was willing to sit without grabbing at that silly hat on his head. Then, after a short break, they did the Bayley Assessment on him. The Bayley is a standardized test for babies that measures developmental levels in several different areas (cognitive, language, fine motor skills, gross motor skills). I was very impressed with how well Colby did with this. He sat in my lap and participated for 1 1/2 hours without getting fussy! He did start to get sleepy near the end, but he hung in there like a champ.

I have to brag on Colby for one specific task that he completed during the test. The task was to put small cubes into a cup similar to a coffee cup. She showed him one time how to pick up a cube and put it into the cup. He then proceeded to very meticulously put all 9 of the cubes into this little cup. They were shocked that he was able to do this. In fact, they said they were pretty sure he was the first child they had seen actually get all 9 cubes into the cup. I was just amazed at how patient and determined he was to do it. He shows a lot of focus for a 13 month old!

The results that they gave us were very similar to what we already knew, considering he just did this a couple of months ago at his Neonatal Follow up visit. He is doing great in every area except his gross motor skills (rolling, crawling, walking, etc). I try to not worry about this too much. Jason and I kind of feel like this is part of God's plan for him. If he isn't crawling or walking yet, then he has a better chance of recovering from his surgery. Plus, he shouldn't burn as many calories as if he were crawling or walking, which will hopefully help him put on some weight. God truly is amazing!

I think the research coordinators plan to send me a copy of the results from this study when they finish. I have no idea what they will find, but I am happy to know that Colby had a small part in this. It would be wonderful if they could use this information to help other CHD babies in the future not suffer developmental delays. Colby will be proud to know one day that he helped other babies like himself. I know Jason and I are very proud of him already!

I have to mention that the three ladies told me several times how much fun they had working with Colby. He was his usual smiley self. He also showed them how opinionated he already his (wonder where that came from...Jason maybe???). When they showed him a toy that he was not interested in, he would push it to the side or throw it in the floor. His best part of the test was when they were using little hot wheels cars. All boy for sure!! They said that if they were measuring flirtation, he would be off the charts!! Again, wonder where that flirtiness came from? He is just so funny. I love seeing his big personality develop more and more each day. We have our hands full for sure with 2 little hams!!!